Tessa Reed Shea's Documentary: Still Struggling

Tuesday, September 6, 2011

Still Struggling

My nurse Tiffany left just after midnight last night and I had just spit up a big glob of mucus, so I started the night off pretty good with Daddy. That didn't last long and then I needed my medications, temperature taken and lots of suctioning so it was another sleepless night. I got a nebulizer treatment early this morning because I was so dry and suctioning was only making things worse. That really loosened up some pretty thick mucus and then I had trouble with that and was having a rough time keeping my oxygen stats up.

My nurse Joy came again this morning and we spent most of the morning trying to clear all the mucus that built up over the night. My hospice nurse Lynda also stopped by and we did some more nebulizer treatments and position changes and still no relief. I eventually took a hot bath with Mommy and that finally cleared me up a little and we were able to suction a bunch of congestion out so I felt and sounded better.

It didn't last long, and the really loud stridor and mucus were back and so was my low oxygen levels and high heart rate (and fever). Lots of suctioning, nebulizer treatments and position changes later, I was finally able to fall asleep but still sound pretty awful.

Now I have another nurse Carol here to take care of me tonight so Mommy and Daddy can get some sleep. It has been a long few days and they are really tired from crying, worrying and not sleeping. I will miss them but Carol seems very nice and has lots of grandchildren so I am excited to hear all about them tonight.

No comments:

Post a Comment

My Story

I was born on January 18, 2011 and weighed 6lbs 14.5 oz and was 19.75" long. I was born with lots of fluid in me and no desire to suck or swallow. It wasn't until 12 hours after I was born that doctors started to worry about me. I had an MRI, CT scan and EEG and they discovered severe damage to the thalamus in my brain and diffuse white matter.

I spent a month at the Children's Hospital NICU and they sent me home with a nasal gastric (NG) tube because I still couldn't eat. I started to make a little progress drinking from a bottle at home (10 mls at a time) and then I got the flu and ended up back at the hospital.

It seemed like just after the flu I started arching much more than I had before and lost all desire to want to eat with a bottle. My arching episodes got much worse and Mommy and Daddy thought I had reflux or maybe a stomach ulcer from my NG tube. We scheduled surgery for a stomach feeding tube (G-tube), but ended up at the emergency room because I was arching so much and started to have trouble breathing.

When we checked into the hospital for the 3rd time, they gave me morphine to see if it would take away any pain I might be having from my NG tube. When that didn't stop my arching, they knew something else was wrong. They hooked me up to an EEG and found out that I was have lots of seizures, abnormal brain activity and something called hypsarrhythmia.

The doctors left the EEG on for several days to study my brain activity and my brain activity was something most doctors at the hospital don't see very often. That is when they diagnosed me with Ohtahara Syndrome and also a form of West Syndrome. The seizures are a side effect from my brain injury and my prognosis is not very good. Mommy and Daddy from the advice of some amazing doctors, have decided to bring me home to spend time with my family and experience as much love as I possible can.